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£4,000 heart screening test saved my baby’s life - now I want every hospital in Ireland to have one.

Tuesday, 29 May 2018

A HEART screening test costing less than £4,000 has saved the life of a new-born baby in Daisy Hill Hospital.

Now the child's mother, Burren woman Katie Dinsmore, has called for the piece of equipment to be installed in every hospital across the province as it is only available in Newry.

Baby Dáire was born on April 25, and as Katie and her partner Alan Lawson were getting ready to take her home, along with her big sister Brooke (7), a final routine screening test revealed that she had a very serious heart condition known as Transposition of the Great Arteries (TGA).

Just one day after her birth Dáire was rushed to Dublin's Our Lady's Children's Hospital for keyhole surgery followed by open heart surgery the next day.

Daisy Hill is currently the only hospital in Northern Ireland to use the new born heart screening test known as Pulse Oximetry, which was funded by Heartbeat NI.

Thankfully, Dáire is now thriving at home surrounded by her loving family but Katie explained that if the heart defect was not picked up by the screening test her daughter could have lost her life and it would have been put down to cot death.

"That really hit a note with me and if it had happened I would have been thinking was it something I had done that caused her death," Katie told the Newry Democrat.

"If you think about the other potential babies that may have died, they could have had a heart condition that was never picked up.

"It's only a tiny wee lead that's put on to her foot to check everything, that's all it is.

"It saved Dáire so it should definitely be done everywhere. Even if it saves one life."

TGA is a congenital heart defect where oxygenated blood is pumped back into the lungs, while the deoxygenated blood travels around the body. Out of 100,000 new-borns there are only between 20 and 30 born with the condition.

Congenital Heart Disease (CHD) is a general term for a range of birth defects that affect the normal workings of the heart.

It is one of the most common types of birth defect, affecting up to nine in every 1,000 babies born in the UK.

Nearly 50% of babies born with CHD appear healthy at first without any noticeable symptoms, indeed it took 12 hours before Dáire began to show any signs of having TGA.

"Her saturation levels were supposed to be sitting at 100 to 120 but hers had gone down as low as 70," said Katie. "The only reason they picked it up was because of the piece of equipment that Heartbeat NI put into the hospital.

"Daisy Hill is the only hospital that does this check so we were very lucky that we were in Newry."

After hospital staff contacted a consultant, Dáire's family were informed that she would be rushed to Dublin for emergency surgery.

The keyhole procedure involved placing a balloon in her tiny heart in order to open a valve which allowed the blood to receive more oxygen.

Dáire was just two-days-old when she underwent open heart surgery.

"She did really well after the surgery and she was in the Intensive Care Unit for over a week," continued Katie. "There wasn't an infection or anything like that which was really good.

"She was moved up into the heart ward where she was recovering but they didn't want to transfer her to Belfast until her drains were removed. The drains were removed really quickly and they were shocked at how well she had recovered.

"She was only in Belfast for a couple of days before they discharged her home."

As Dáire grows up she may have to undergo another procedure in the future if her heart fails to grow as quickly as she does but thankfully she's in the best place she possibly can be - home.

"It was the worst experience I've ever been through in my life but now it's like a dream that she's home," added Katie.

"It was a bit scary bringing her home initially but she's grand. Sometimes the only pain relief she actually gets is a wee bit of calpol and there's days she doesn't even take it now.

"You would look at her and really think that there's nothing wrong with her.

"The surgery Dáire had in Dublin should stand by her now, she may need further treatment in the future, but at least we now are aware of the risks and can keep a close eye on her."

The Southern Trust is now exploring the potential of introducing the heart screening test to Craigavon Area Hospital and the Chairman of Heartbeat NI, Irwyn McKibbin, has appealed to all hospitals to make it a mandatory check on new-borns.

"While CHD may only be detected in one or two babies each year through screening, the difference from screening can be life changing for that small number of families," said Mr McKibbin.

"Without such a proactive approach by the paediatric team, the outcome for baby Dáire could have been very different.

"I would appeal to all hospitals to make Pulse Oximetry testing as a mandatory check on new-borns. It is vitally important that babies with a heart defect are diagnosed as soon as possible and treated as a matter of urgency.

"I would like to congratulate the staff at Daisy Hill for not only undertaking what was initially a pilot study, but for persisting with it once the trial period expired.

"I am delighted for Katie and Alan that Dáire is doing so well and that Heartbeat NI played a small part in this good news story."

Meanwhile, the Southern Trust's Associate Medical Director for Children and Young People Dr Bassam Aljarad, who introduced the screening programme, added: "More timely detection helps us to identify more babies with CHD at a much earlier stage, ensuring that we can keep them monitored and give them the treatment they need to prevent greater health consequences, disability or in the worse cases premature death.

"Along with our standard clinical examination, this additional very simple screening test, which only takes a few minutes, greatly increases the accuracy of diagnosing CHD."